Woe betide the person who develops a chronic health condition that has no name and which doesn’t show up on conventional health tests. You are about the enter a hellish realm of being seen as a lazy, antisocial, hypochondriac – and thats just what your doctor thinks of you. Your friends and family will become tired of you and your one subject conversation and you’ll start to not bother mentioning it; which will further cement the notion in everybody’s heads that you are making it all up and in reality you are living it up on the couch at home watching YouTube videos all day while they’re all out paying taxes.
If you’d only just go out for a walk, do some exercise, be more positive!!! Then you’d heal they might say. They will say it in all sorts of clever ways too, not even directed at you, like, “wow what a nice day for a walk, it’s good to get outside in the fresh air and sunshine” or “working is so good for you psychologically, isolation is so unhealthy.” (translation: you should try it you lazy git).
I think the saddest part is that most of the people who come crashing down with a chronic illness were in their previous lives, over achieving, super competent, energetic, confident, brilliant people, and yet little speculation is ever made about why a person would want to give all that up to become a hypochondriac couch sloth.
Could it be that we simply don’t have a label for these conditions yet? Why should they be invisible just because there’s not yet a test to prove them ill? Do people seriously give up their full and busy lives to choose isolation with no financial benefits, barely functioning throughout the day in a variety of track pants? If a previously fully functional person is now on the lounge 24/7 unable to do even the dishes each day, is that not a sign something has gone catastrophically wrong? If it happened ‘overnight’ is that not a sign of a physical manifestation? Perhaps caused by ongoing mental stresses? Perhaps, the mind can only take so much as the stress starts to strip the body of its natural resources to heal, being in an ongoing state of high alert. Maybe there’s a limit to what our bodies can take. Maybe ten years of stress or even one can require the equivalent time to rebuild. Maybe epigenetic switches get flicked as the body becomes more and more dysfunctional and maybe chronic illness hidden for so long starts to make itself known in a thousand small ways resulting in no one thing in particular but rather a general slowing down of the whole system, inflammation throughout the body, empty tanks flashing red lights for cortisol, hormones and adrenaline. Finally a breakdown with no name. Blood tests not yet showing up issues. Subclinical results ignored.
After you crash, you may get a few months of understanding and sympathy from your doctor/workplace/family, beyond that though, once you have no serious label to flash around, you are very much on your own unless you have extraordinary support around you.
I am that person. I broke down 18 months ago due to severe prolonged stress in the workplace. I’ve had the luxury of having extraordinary people around me, family, friends, Doctors, Psychologists, and work rehabilitation. I have an income of worker’s compensation, that means I can recover without the burden of financial stress and as I get well in comfort my heart goes out to the hundreds and thousands of people I meet online who are suffering similarly but without the income or even support that I enjoy. Forced to move out of their homes, loss of partners and pets and living in virtual poverty and somehow still trying to improve their health. Those poor souls enter the vicious cycle of mental stress creating physical issues or vice versa, throw in loss of car, house, family, pets, and independence and it doesn’t take long to uncontrollably spiral into absolute despair.
My concern is that the ‘system’ has nothing for these people. If you lose your job due to ill health and you’re forced to go onto Newstart with a medical certificate how can you live on that?? Could you live on an average of $280 a week?
What about DSP you ask? As a former mental health worker I can personally testify that you need to be a virtual vegetable to get DSP payments these days. The application process alone is a journey of horror and rejection for those with nebulous labels like CFS.
There needs to be a change in our whole medical system. There needs to be more collaboration between mental and physical health specialists so people can be seen and heard as a whole and it needs to be recognised that mental and physical health are not independent of each other. Additionally it needs to be highlighted that long term mental stress can result in a total physical breakdown that can take years to recover from. Even when the mental stress is over, the body is now broken. Out of balance. Sick. Fatigued at a cellular level. In a state of flight or flight. Depleted. And the only thing most Doctors will do is push anti-anxiety medication. Medication has its place but it’s no cure-all, it’s a bandaid that often causes a pile of other unwanted side effects while the real issues are never addressed. Much like pulling the bulb out of the dashboard when your oil light comes on. It will make the light go away but that won’t really help the underlying problem of low oil.
I want to finish by saying If you know of anyone who has crashed to the point they now are dependent on others, please, please give them your sympathy and know that if they could work they would. If they could do the dishes they would. If they could socialise they would. When you see them and they look great, remember they’re not pretending to be sick. They’re pretending to be well.